Diagnosed with cancer

Posted by: wendydos in TCCTa - Noninvasive papillary carcinomaside effectskidneyinfectionhigh gradecystoscopybladder cancerBCG on Print PDF

Hi, my Name is Wendy and I am 51 years old. In April and September 2010 I presented with gross hermaturia. Went to my GP (general practioner) and after a urine test she prescribed an antibiotic for a UTI. After 2 days on both occasions the bleeding stopped. Then in February 2011 it started again. My GP again tested for an infection, gave me an antibiotic. After 7 days the appearance of blood had not subsided and my GP referred me to a Urologist.

I went to see the urologist and he suggested that I be booked into hospital as he would need to perform a cystoscopy and wanted me to have an IVP (intravenous pyelogram) where they take x-rays with a contrast dye at the same time. The cystoscopy would need to be done under General anesthetic. This was scheduled for the following week.

The IVP clearly showed that my left kidney was not functioning and that there was “something wrong” in the renal pelvis (bottom of kidney), but they could not see any stones and the bladder appeared to have a normal appearance with no indication of any growths.

The urologist said it looked like there was a tumor in the renal pelvis and wanted a CAT scan done to confirm and to rule out any other possibilities as they weren’t sure why the kidney was so damaged that it no longer functioned.

 He also asked me then if I had ever smoked. Well, I told him I had been a smoker for about 32 years and had stopped smoking in November 2010. He nodded his head and said the damage to my kidney had happened over a long period of time. And was probably caused by my smoking.!!

 

After the CT scan showed no stones but a mass on the renal pelvis, the Urologist said I would have to be booked into hospital again as he was going to do a biopsy on the pelvis and at the same time insert a stent to drain the kidney. This was scheduled for the following week.

 

After the biopsy I had to wait another 2 days for the pathology results.

I was diagnosed with grade 2 transitional cell carcinoma (tcc) in the left renal pelvis.

 My urologist then suggested that I have the kidney and ureter removed as (1). It was no longer functioning and was badly damaged, 2. TCC is normally found in the bladder first, and then can spread to the kidney via the ureter. (Nephroureterectomy)- Removal of kidney and ureter.

 He also told me that tcc had a high rate of recurrence (upto 50%) and there was a large possibility that the cancer was also in the ureter and could recur in the bladder. Not to mention the right kidney / ureter.

 On the 1st April 2011, I had the left kidney and ureter removed (pathology showed that  traces of tcc were also sighted in the ureter)  stayed in hospital for 12 days because I ended up needing a blood transfusion as well, but everything else went smoothly.

 Then in July 2011, I again presented with gross hermaturia. Literally flew off to the urologist who immediately booked an IVP with the radiologist.

The IVP showed that there was something in the bladder.

On the 5th August 2011, I was booked into hospital again (4th general anesthetic this year) for a cystoscopy. When I woke the doctor informed me he had removed 5 tumors that were all superficial. (Even though I was aware of the risk of recurrence, I presumed it would be years, not months).

 I had a catheter with 2 tubes, one to drain the urine and one to allow a saline solution to continually irrigate the bladder for 24 hours after which it would be removed if the urine was clear. Spent 2 days in hospital.

 Received the pathology report on the following Tuesday. I was diagnosed with stage Ta grade 2 papillary cancer. Went to see the urologist for a post op visit 2 weeks later where I had to give him a urine sample which he would send away for testing (he always does this) and he was happy with everything else. We then discussed BCG treatment as an option as he looks at Grade 2 as high risk. He said he wanted to wait 6 weeks from date of TURBT before starting BCG treatment.

Then another surprise. I get a call from the urologist the following Monday to say the pathologist has picked up a bacteria in my urine.

Pseudomonas –“HOSPITAL Bacteria” that is antibiotic resistant - they are able to survive in a variety of unexpected places. For example, they have been found in areas where pharmaceuticals are prepared. A simple carbon source, such as soap residue or cap liner-adhesives is a suitable place for them to thrive. Other unlikely places where they have been found include antiseptics, such as quaternary ammonium compounds, and bottled mineral water as well as saline solutions used for bladder irrigation.and Closely associated with catheter use.

I would need to go to an ER immediately and start a course of antibiotics through an IV (does not respond to oral antibiotics). This would have to be done 2x per day every 12 hours for 5 days. Not a good week for me.

Back to the urologist a week later for another urine test – bacteria gone.

 

I finally started my BCG treatment on Wednesday 14th September.  It went much better than expected (think I was expecting the worse). I keep underestimating my Doctor. He definitely knows exactly what he is doing and does it so calmly and with absolutely no fuss, explains exactly what, where, when. It took about 10 minutes to install the medication and I was told I could disappear to one of the waiting areas or the restaurant  (but was not to eat or drink anything) and then return after 1 hour. Was also given a prescription for antibiotics to take after the catheter was removed.(The catheter was left in place.)

 After 1 hour I returned and the doctor emptied the bladder and removed the catheter and I was told to wait another hour before drinking anything and to take one antibiotic immediately. (pseudomonas)!!.  I felt fine.

Until Thursday mid-day - started getting freezing cold and shivering and felt a bit of body ache all over (almost like flu - which I have never had).

We had a problem at Work they decided to evacuate so this was the perfect opportunity for me to go home (13h30)

Did some chores and went to lie down. Had an early night and by Friday morning I felt fine.

I was wondering what strain of BCG is used in the States (or anywhere else)? Do they differ?
My Urologist is using BCG Culture SSI –Danish strain 1331 120mg (4 vials of 30mg each).
On the insert that comes with the vials, it states that BCG Culture SSI is not a biohazardous material and can be voided in the usual manner and no special precautions are necessary. This is contrary to what I have read on many sites.Any feedback would be welcome please.